More Medical Updates

It has been a really crazy week here. We have had lots of challenges and some new info to update for me and Colton.

The beginning of the week started our family with the cold/flu thing that is currently circulating in our area. Caiden and Kels have both struggled with high fevers and Caiden has been very sick the whole week. Kaeli, Preston & I have also had varying symtoms, though not as extreme as the younger kiddos. Preston stocked up on all the med helps we could and added them back into storage. We are keeping our hopes up, that as school starts again next week, that it might miss the rest of the kids.

Yesterday, Colton & I both had extra appointments to see specialists. He did pretty well at OT and made some really good progress. Jeannie wanted to see if he could jump rope to practice strengthening some core and fine motor muscles. At first he didnt quite get it, but then it clicked. His face was beaming (and so was I) as he jumped 30x in a row! He has never been able to jump rope before. It was a great accomplishment for him. The extra large motor activity really helped him focus on his handwriting too. He also practiced tying his shoes again. This is a very difficult small muscle activity for him, and he got frustrated quickly. Jeanie is so patient with him though, and her encouragement and talking in funny voices (arnold swartz/rocky balboa/etc) kept the stress from gaining and he was able to get both shoes tied. This is an on-going trial for him, but he is making good progress one baby step at a time.
We will be in holding pattern now for awhile though. Jeanie has to send in a progress report to Dr Shawn and TRICARE to keep insurance coverage updated. I am hoping that things will go more smoothly this time, and we wont have to wait too long to get him back on her schedule. Last year we missed 2 whole months, and then some, because insurance stuff didnt fall into place well. He is doing so well, I am hoping we wont lose ground while we are waiting.
On a side note for Colton, I had a phone call from Dr Shawn yesterday too. He had finally been in contact with the psych specialist Preston & I visited with several weeks ago. We had a very long conversation about what she is recommending and what future concerns may be. One good thing will be that she is willing to finish Colton's evaluations and between her and Dr Shawn we will most likely confirm a diagnosis for ADHD. This will be one tiny piece we are working through right now, but it may be enough to take to the school to update his IEP again and get some more medical stuff attached to it. Things that should have been there since Sept...I am hoping that we can also get an outside speech eval done as well, so that we will also have that piece to take to the school. It has been very challenging and frustrating to have reports from specialists confirming what Colton needs, only to have the school IEP team totally dismiss all his reports. We have known for months that Colton needed updates and that there will be more in the future, and to have the school almost retain total power over his IEP and what they will/wont do. There is much that should be on his IEP that isnt yet, and I fear with our continued battle that we may not see it finally there until it is too late for this year to do any good. Thankfully, we have Dr Shawn and others who are willing to help us fight for what is best for Colton. We will be talking more with the new psych specialist and with Dr Shawn about seeking out a medical "case manager" that would help us better coordinate and seek out the appointments and help Colton needs, even with the school district. It is just brainstorming for now, but hopefully by Feb we may have some more pieces and people in place to help.

I also had another appt yesterday. I saw my sleep specialists and we talked for quite awhile about all the options out there. He still feels that we have not exhausted all the non-meds possibilities. He is referring me to a cognitive-behavioral sleep specialty team. They will help me be able to know/physically do things to help me get some kind of sleep pattern back in place. It will be more appts for me to travel to Corvallis, but hopefully will be successful. The other plan, for now, is for me to aid that process a bit until I can get those appointments going. I came home sporting some new "shop" glasses with amber colored lenses and some dissolvable melatonin tablets. The glasses help to block out all of the blue light waves, simulating late afternoon/evening light. Trying to tell my brain it is the end of the day and time to get ready to sleep. The melatonin, though in almost miniscule amounts, helps my brain to try to also go into sleep mode by helping what my body is not able to do for itself. I have to have both, starting at 5pm every night. Last night, I was zonked on the couch with Kels by 8pm. Not sure if it was the new stuff, not sleeping hardly at all during this whole last week, or a combo of both. The bummer was that I woke up long enough to have Preston put me to bed, and then lay there for IDK how long before I fell back asleep. I slept off and on for awhile, but finally was laying there with a headache long enough that I just got up.

I am going to try to keep some more consistent records to be able to take back to next dr appointments. Will just keep trying to move forward and try to be as patient as I can. Even though it seems like we are just spinning our wheels, we are knocking out major things and finding answers, even if they are the right ones yet. Maybe this year will help Colton & I both find more answers to help us regain some health and learn new things that will help us both better meet the challenges that are ahead. We both have lots of good people to help us, and that is one thing that can make all the difference.